Community Minded

Category: chronic illness

The phrase, ‘no man is an island’ expresses the idea that human beings are better off when they work in a team. Author Stephen Covey echoes a similar sentiment in his book “The 7 Habits of Highly Effective People”, when he states, “Interdependence is a higher value than Independence”, and if you’re still not convinced, Proverbs 27:17 (NIV) says “As iron sharpens iron, so one person sharpens another.”

Many years ago, my psychologist informed me that she thought, not only was I fiercely independent, but perhaps my attitude was better described as ‘anti-dependent’. A self-protective mechanism developed as a result of an abusive childhood to keep myself safe. I was proud of myself. I saw this as a complement and a great asset, despite the fact it was stated as a drawback.

While I fully accept this sentiment on behalf of my cats, I’m not so sure I believe it is true for myself.

Like so many people battling chronic illness, I still grieve the previous version of myself. I call her Leonie V.44 the 2014 model; she was the fastest, most efficient, energetic, self-disciplined, staggeringly resourceful version of me yet. With a high-speed processing capacity and the ability to outsource what she couldn’t do via memory alone to her phone, there wasn’t much she couldn’t handle.

Unfortunately, the upgrade Leonie V.45 (2016 model) was full of bugs. She was still very efficient and even discovered she could brush her teeth and sob loudly at the same time (the crying actually facilitated the teeth brushing) so as you can see she was still very productive with her time. She didn’t know it yet, but she was about to receive a big ‘system error’ message. A massive mental and physical breakdown that she’s still recovering from a year and a half later.

Eighteen months of virtually zero productivity equaling weakness in V.44’s eyes will, ironically, be the greatest strength of the up and coming V.46. Leonie V.46 (2017 model) has changed her definition of the word “productive” and has upgraded her “self-worth” files.

Productive for me these days is the basics of daily living. Showering, general housework, meal preparation and exercising when I can, not pushing myself to do things that are going to stress my body and mind. In the past I’d always ignored that little voice, the one that whispers, “I’m tired now”, “I’m feeling stressed”, “I am unhappy in this situation or environment”.

I’d become too serious. I’d forgotten how to be playful. I was letting people abuse my good nature. I felt like a go-cart without brakes hurtling down a mountain. I was gaining speed and bits were starting to fly off. I had lost control, and my lifestyle was no longer sustainable.

I have a pathological hatred of saying no to people. In fact, I’m so ineffectual, that I have been known at times to say, “Yes, YES I’ll do it!” before I even know what it is I’m being asked to do. I have read that many people with chronic fatigue share this common trait, also known as “The disease to please” and also predominately a female trait. Having extremely low self-esteem from a very young age, I felt that I was worth more when I was giving and productive. I could make people happy, make them like me. Make myself worthy of drawing breath on this planet. It filled the place inside of me that I couldn’t fill myself.

The only issue with solving the self-esteem problem from the ‘outside in’ was that I also gave everyone around me the power to make me feel worthless. As the saying goes, “You can lie down for some people to walk on you and they will still complain you’re not flat enough.” Some people can’t be pleased, and if you’re unlucky enough to have a parent, partner, boss or close friend who falls into this category you might find yourself giving to the point of depletion while feeling more worthless than ever. In psychology terms, this is called your “locus (location) of control”. If it’s outside of you, you will be forever trapped, needing people to prop you up, if it’s inside of you, then you can do that for yourself, and finally, the opinions of others will cease to bother you. As per the adage, “A lion doesn’t lose sleep over the opinions of sheep.”

You could probably get by surviving in this manner if you were able to guarantee that everybody around you had your very best interests at heart and wanted to affirm you each and every time you needed it. However, sadly the world is full of opportunists, narcissists, and sociopaths who are predators and the natural enemy of the “sacrificial-giver”. They can sniff them out across a crowded room, and manipulate and control them almost instantly, expertly tapping into their automatic built-in “Yes!” (how flat do you want me?) response.

They’re often very charming, and they are past masters at projecting their own “stuff” onto others, which the neurotic sacrificial-giver is happy to take on. The sacrificial-giver always says, “it must be my fault” and the narcissistic-taker always agrees with them. It would appear to be a match made in heaven if it wasn’t toxic and destructive for the giver. Two wrongs don’t make a right, and when the sacrificial-giver learns to break the cycle, they often are left isolated and friendless. This, in turn, can pull them back into the whole, “I was wrong, it wasn’t you, it was me, I changed, I should have met your needs”. Escaping the cycle means preparing to cull your so-called friends and to face some nasty backlash. On the upside, allowing yourself to say how you feel, and to say no, will very quickly weed out the emotional vampires who feed off of your weakness.

The sacrificial-giver usually ends up sick; if the mind can’t say no, at some point the body will. You can’t serve from an empty vessel or a broken one. Ironically when I got sick, being forced to say ‘no’ was one of the most difficult things that I had to do repeatedly. Even as I write this, I had to say no to an engagement I was meant to be at this morning. I hardly slept last night and the horror of saying no was only marginally outweighed by the horror to follow of the toll that would take on my body and mind if I forced myself to say ‘yes’. These days when I say yes to things I shouldn’t, I’ll pay a high price, and possibly end up having another breakdown, and I can’t do that to myself. I’m worth more than that.

I’m now saying, “I’d like to, but I’ll get back to you closer to the day,” or “Sorry I just can’t commit to any plans at the moment, I need to be more spontaneous these days due to my health”. I can’t handle any kind of stress, so I have to carefully consider where my physical and emotional energy goes due to the toll it takes on my health. I honestly do have to subscribe to that Polish expression, “Not my circus. Not my monkeys”. I can’t expend precious energy getting all outraged and involved in any dramas that are not absolutely my circus nor my monkeys. Not that I’m calling my children monkeys. Ok, I am, but it’s purely metaphorical.

I am changing. I have been forced to change. I now have the gift of working on myself to reconstruct who I am from the inside out. To say yes or no for the right reasons, not because I need to feel loved, or important. I’m learning to find that inside of me, and it’s a real challenge!

I am learning to see myself as a person of value independent of my level of productivity, and I highly recommend it.

I was at my GP yesterday, and I decided to ask him for my appointment to be free; because I was still sick, and he hadn’t been able to fix me. I didn’t really, but I coulda.

As ludicrous as this may sound, in Ancient China (and some other countries too) that was precisely the way it worked for over 3,000 years – minus the past 300 or so. You paid the doctor to keep you well, and when you got sick, the payments ceased, making the Doctor work harder to get you better. A Doctor’s income was determined by how healthy his patients were.

Colette once said, “Our perfect companions never have fewer than four feet.” Meanwhile our two legged companions are often a source of hurt and pain.

After working for five years in Mental Health, I have made the observation that those hurt most by two legged creatures, place greater value on the four legged kind. Furthermore, those four legged creatures also provide around the clock therapy to those who suffer the isolation of chronic illness.

Their friendship, loyalty and love are almost unmatched by our own kind. With their endearing personalities and ability to connect to us on a soul level, I believe they are sent from God to walk beside and heal us.

I have three cats and each of them, with their funny little quirks, gives me infinite amounts of love, affection and entertainment. One of my cats would lay beside me when I was sick and shaking in the early days of my illness, he’d snuggle up close to my ribcage (and he was never usually a snuggly cat) and purr. You would think with all the noise I was making he would have bolted under the house, but he didn’t; he knew. Pets know.

I’ve always been an animal lover, however after working in mental health I became even more aware of the incredible power of pet therapy. I started to realise that pets were anti-depressants. Pets were anxiety medication. Pets were motivators. Pets were companions and pets were pain relief. Pets made the unbearable bearable. Pets were someone to come home to and to be missed by. Pets were someone to care for and to be cared for in return.

We may never fully appreciate their value until we have lost our health, our purpose or our faith in humankind. There at the bottom of that dark, dark place, when hope is but a slim ray of light, if you are lucky enough to have the love of an animal you chose or one who chose you, then you stand a decent chance of making it out alive and sane.

If I died alone and no one knew, would my pets eventually eat me? Probably. But while I’m alive I’m sure they just want to be helpful.

For the most part, I accept that I don’t know when I’ll be well again. I’m well some days, and on others I’m plagued with all sorts of aches, pains and my almost constant companion – exhaustion. My energy is like the Elvis announcement; he’s left the building. It’s there or it’s not. I can’t force energy to be there, I wake up and I pretty much know, ‘today I can drive’; ‘today I can do some shopping, but I’ll have to be quick’; ‘today I will not be able to deal with any social interactions without stabbing someone in the neck’. I can push myself, however there’s always a price for doing that, so I’m very careful as to which events are worth that effort of the inevitable aftermath. For example Dom’s mum was very unwell and I had a feeling it might be the last time I would see her so I braved the 2.5 hour drive to the central coast and somehow I rallied on only 3 hours sleep, but I was knocked senseless for the next three days. Clearly, I have some small amount of reserve, although there are days when I feel I wouldn’t have the energy to get out of the house even if it was burning down around me. The best way to explain it is that I can wake up feeling like I’ve just spent all day moving house; a house with 5 sets of stairs.

I should clarify, better than an orgasm for most chronically ill people.

This is a powerful and wonderful tool and anybody who knows me will be sick and tired of hearing me say with wide-eyed awe, “How do they do it???? Four-dollar delivery!!!!! Or free if you choose ‘flexi time’ AND they actually SHOP FOR YOU and then, THEN, they DELIVER IT TO YOUR DOOR, no kidding. SERIOUSLY. And and, AND, the guy, walks in and PUTS IT ALL ON THE BENCH FOR YOU.. for FOUR DOLLARS!!!” GET AWAY! GET AWAY!!!! No. no. its not true. It can’t be!!

You do the shopping from the comfort of your lounge, bedroom or toilet. Your personal account has a saved ‘bought before’ list so once you’ve populated that, it prompts you to get all the stuff you usually get so you wont forget anything. GENIUS.

With an expression of pure rapture and rather like somebody with advanced dementia and only the one story to tell, I can tirelessly repeat this miraculous phenomenon word for word, to anyone who will listen, over and over without getting bored or losing even one tiny iota of enthusiasm. Never. I mean FOUR DOLLARS. And they DO IT ALL FOR YOU. AND DELIVER IT. INSIDE THE HOUSE. LIKE literally ON YOUR KITCHEN BENCH and nine times out of ten the delivery guy is even cute! Of course to get the four-dollar delivery I have to pick a time slot like between 6am and midnight, but I don’t care. I’m HERE aren’t I? Just being sick and stuff. If you are healthy and reading this you probably can’t fathom my excitement over not having to leave the house looking and feeling like crap and exposing oneself to the fear of bumping into ex-boyfriends and navigating crowds under fluorescent lighting while I feel like passing out, somehow racing around the aisles before a total collapse to then make it home again, only to bring it all inside myself.

Chronic illness?? Do yourself a favour. Get your shopping online. Save your energy for chatting up the delivery guy.

They say a fool and his/her money are easily parted, I’d like to alter that saying to a ‘Chronically ill person and their money are easily parted.. to products claiming to make them feel well.’

Dry skin brushes. They’re expensive and they look really great hanging in the bathroom all organic like. That line should go at the bottom of my article, since it sums things up succinctly. I enthusiastically bought my whole family one each after reading several online articles saying this was a cheap and easy way to give your body a wake up each morning before your shower, it feels nice and it’s really good for your circulation. Glowing skin. Bla bla bla. I’m sure it really is; but I stopped doing it after about 2 weeks …when it was clearly not living up to one articles claim, “as good as that first cup of coffee in the morning for waking you up and making you feel great.” No. sorry. No. It is not. They are both a light brown colour and the similarity ends there.

Sometimes I think its just another bloody thing to do each morning. Scrape your tongue, exfoliate, moisturise, cleanse, tone, juice a lemon, make a protein shake, yoga, tai chi, meditate, cleanse your chakras, get some sunlight and a walk with your shoes off to get the earths negative ions OMG it’s never ending. Maybe the skin brushing has fabulous long-term benefits but it looks like I’m never going to find out. I have to admit that the ‘coffee’ line got me in since I’d given that up (I say that so easily but it was like giving up crack), and I would love to think the dry brushing could give me the caffeine and dairy fix I was after, so of course I was headed for disappointment.

Look, if you have an extra 5 minutes to brush your skin all over every day, I say do it, it does feel nice and it has benefits and you go for it. Don’t let me put you off.